Calling All Grammas

He was screeching when Gramma Maggie came to visit today. Pictured left: before he learned to screech, during a visit with Granny Holmes. I hope Bo's apparent rudeness didn't scare Gramma M away for another month! He does love him his grandmas, he just also loves to talk loudly (yes, a Chan, we know).

Also, I've been madly weeding out all the scary-toxic baby products in the house. Who knew this stuff was toxic?! http://cosmeticsdatabase.com/browse.php?maincat=babycare&nothanks=1

yikes. I am that crazy mommie.

Long Life Noodles

We are so excited for the New Year. We will be taking our first non-medical trip this New Year Weekend to Chicago to participate in the regional Oley foundation meeting. Hopefully we will learn new things about Bo's care.

And the icing on the cake is that his Omegaven doc and pharmacist will be there!

By the way, we made it through the month of January without having to be admitted to the hospital! January and November. I can't wait for the day when the hospital-free months out number the other ones.

Reflections on the Year of the Pig

As the Chinese Lunar New Year approaches, I have been reflecting on the last year and all the miracles we have witnessed, along with all the forgiving I need to prepare to do to clear my emotional register for the new year. Forgiving myself for being too hard on us for not being perfect. Forgiving of the U of M doctors for operating from a place of sobriety due to experience, instead of soaring hope (what we needed). Forgiving of Bo for being so cute that we are spoiling him out of control. Forgiving of Murray the Cat for getting sick amidst all the Bo frenzy.

Now that Bo is stable and developing, it is hard to remember how terrifying it was walking into the NICU every morning those first few weeks. Wondering if he would still be in his crib, or if his room would be empty. Wondering if we would still have a need for the carseat sitting empty in our back seat, and how I would have the strength to remove it, if I no longer had a Bo to seat in it. Wondering who else would have the strength to pack up all the baby gifts and clothes and furniture, because I knew if it came to that, I wouldn't. Those were the longest, darkest nights. And I know our stays in the hospital are far from over, but none will contain the mind-crushing terror of those mornings.

I am so grateful to have Bo with us for another amazing day. I am so grateful that we had those mornings to remind me to be grateful. I am grateful I never had to take the carseat out, or find someone to pack the nursery. And grateful it was only 5 weeks in the hospital and not 5 months, like a lot of other short gut kids, or 5 years, like the older MVID kids. And as I pray that Bo does not develop additional pathologies, I am still grateful for these last eight months. And I know that now I do have the strength to face the future, whatever darkness or sweetness the days ahead hold for us.

I just cover his big chubby head in kisses till it stinks from my saliva. I kiss and smooch and blow raspberries until he yells. And I noticed I only just started doing this after Christmas. I don't think I really kissed him all that much before then. I think all those terrible nights and terror-filled mornings just made me try to harden my heart. Those early months, we just did not know if he would actually make it to his hundred day birthday, or Christmas, or January 1st, or his first birthday. We are actually planning his first birthday. What a miracle.

Thank you for joining us on this new path that Bo has led us towards. Thanks for reading.

A New Hat! Thanks, Tung!

Although it hasn't made it even close to freezing today, and I had to fight to get into my car because the doors were frozen shut, we had a great day together. Jose built a fire at noon, and Bo and I played tummy time games, sitting up games, and ate cereal.

Bo loves his new hat. My sister in Hawaii made it for him. He looks like a little goblin in it with two puffy ears on top. I had to include a goblin-face expression. We are so lucky to have another great day with our little goblin.

PS thanks for the comments; this love and support helps me be the best mom for Bo, and Bo and I really appreciate it

Eat This, U of M

Finally, fresh new pix. We have tentatively started Bo on solids these last 2 weeks. UMich docs threatened us with increased diarrhea to the point of dehydration. No such thing has occurred. In fact, ever since we left their care in September, I have been regularly breastfeeding him, albeit in much smaller volumes than his peer group eats, but breastfeeding, nonetheless.

And, his WBCs were in the normal range today (16.7). Though his bilirubin was up slightly, 0.1 is still awesome, and pretty darn close to last week's 0.0. Another great day with our new best friend, Bo. We are so lucky.

All Text Update

Apologies to all Bo fans everywhere, but I haven't had a chance to upload new pix, so you just get text today. All the drs visits went well and without incident, thank goodness. Bo was showing off for Dr. Page (pediatrician), and sitting up like a big boy. Then with Dr. Cloney (GI) he was talking and talking with his new favorite words, "dadadadada, brrrrrrrrr (big saliva-y raspberry), dadadananana, yeeeeeeeee!" Since we got approved for 180 hrs of respite care through the end of August, we are going on our first nurse-supported date tonight! Thank you, State of Michigan, Department of Community Health!

Aloha!

WBC's are dropping (21.1) much closer to normal levels (19 is the high end of normal). Tomorrow is our well-baby visit, and Friday is our monthly check-up with the GI specialist. Not only has Bo been doing great with the rice cereal; no adverse events, but he really wants to start drinking out of a cup! And, drum-roll please, his direct bilirubin was 0.0 today!